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I'm wondering if I've misunderstood it but is it weird that it turned up so few SNPs? It seems like a biggish study (in terms of the number of controls, at any rate, but maybe that's not what counts).

I think there's going to be a lot of anger and distress flying about when the time comes, and I hope it can be harnessed into exposing the ongoing damage caused by the plague-like spread of the BPS approach to all sorts of other conditions. Funnily enough, when I talked about the 'shock of...

It will be weird not to have to fight for it. I wonder if there'll also be a shock of believing...

:arghh: I wonder what that process would look like and whether there's anything we might do to help it along. For years, our charities have been pushing the 'It's real, it's biological' angle with whatever the latest weak finding has been, and the media has picked it up, and repeated it in an...

Agreed - terrible price to pay.

How do we get out of this situation? Is it a matter of identifying doctors whose attitudes aren't already in (the wrong) place? Or should we be trying to persuade doctors wholesale, hoping that some among them will take us seriously and get interested in helping? I don't know what would even...

We're extremely lucky to have them in the field but they've got a day job and what if there's more than one drug candidate? How likely is it that it will be a 'one and done' situation as it was (I think?) with rituximab? Might we not need several trials going on in parallel?

So it would be basically showing that PwME tend more than most to have genes that tend to allow Biological Mechanism X go wrong, but Mechanism X could go wrong in pretty much anybody if they get hit hard enough with a virus or other immune shock, or if they are malnourished or otherwise...

That's excellent news but why can they do it when the UK can't?

Are we sure? What if they answer questions and clarify the fuzzy stuff? One of us has posted a question on MedRxiv (currently in moderation).

If that happens, will PwME who've got DNA data (for example, from 23&me) be able to check it to see if they have that disease? If a clear DNA signal emerges, I think everyone is going to be desperate to know whether they're inside the camp. Is it likely that the NHS would start testing people's...

If I'm interpreting you correctly, you think the science will start moving fast soon - you've said the right people are interested, you and Jo Cambridge and Jackie Cliff will be putting up your paper, we'll find out if DecodeME shows anything - so what if a solid drug candidate pops up based on...

Is that going to be a problem for us, if research identifies a dodgy pathway in ME/CFS?

It's possible to post a comment on the preprint on MedRxiv. How about asking there about it?

@Grigor, I'm not sure I put that very well - did you want to edit your first post so that you can put that instruction about the subtitles just above the video, maybe? I think a lot of people would find it helpful.

Can you think of a way to build a project that would be good? An exemplar, maybe?

You can jack up the subtitles if you click on Settings, then on Subtitles, and then on Options. @Grigor, you might like to put that in your post, because I also struggled with the small subtitles until I discovered that trick. I'm only partway through but I desperately want someone to copy you...

Maybe this could be the physician-led clinic we want, in effect?

Argh, madness! Do you think we need an ME/CFS conference, either UK-based or international? Even a private Zoom version where researchers can open up? That doesn't have weird exclusions of people?

Thanks, that's really helpful - I've got the Aura ones too. People talk about bacteria but for such use times I'd be amazed if that was any kind of a problem.